20 yrs and still hiding

[cclive35]

had this attaxia thing for 20 yrs now and i have never spoke till now. had the daily remarks of how drunk i apparently am and all sorts of horrible things said, i cant help it but find i stay in most of the time, the dog doesnt judge me lol

[Wyndham]

Well done for joining the conversation.

It has helped me a lot talking to others who have or understand Ataxia.

Very best wishes.

[cclive35]

just having a bit of a rough time lately , kind of fed up with it

[loopylainy in reply to cclive35]

Hiya!

Me too, have had Ataxia for a number of years now and have experienced the same comments from perfect strangers! Only last Saturday night on an extremely rare night out I was told by a perfect stranger that I should get out more and why was I not up dancing!!

Its good to talk though, I have only found this sight recently and reading the comments from other Ataxians is a great help, their sense of humour and understanding of the condition and the tips they give each other for coping has been brilliant for me, just to know your not alone with Ataxia

Keep your chin up xx

[Fifa Volunteer]

Hello

I am sorry you are having a bad time, I hope you feel better in yourself xoon. Don't worry we all get bad spells,

It is true the only people who understand 'Ataxia are those that have it that is why this site is good, You can talk to like minded people.'Don't worry about other people if they have a problem it is just that there's.

We will help all we can.

Regards

Fifa

[Razzy]

I think too many people are quick to judge, I have found that . it seems because you look "normal" they have to assume you are drunk or on drugs.. It is them I feel sorry for ,because one day they will be judged and will not like it. Keep smiling and make them wonder what it is that you know and they don't

On Ataxia UK page on facebook there was a post where you could buy t-shirts etc and while they were funny they described Ataxia well this is the link for the t-shirts mugs etc squidmarks.com/Ataxia_Shirt...

[cclive35]

I realise I'm not the only one and only they would understand, my mother has been amazing the last 20 years but finds it hard to understand why some days I can walk a mile but others only 50 yards. I'm a support worker for adults with physical and learning difficulties. I had my I.d ripped from my neck only last week and told by what seemed to be a normal citizen " your in no fn state to even look after yourself" he was obviously referring to me being drunk. His wife held him back after he yanked my I.d I just called a taxi and quickly left. Although I'm only a volunteer I feel I have a big responsability for that service user and knowing how people can be with me I feel I let him down

[cclive35]

I realise u guys will say its just ignorance but lets face it doctors, police, our friends and families dont understand what's going on. Taking care of others less fortunate than me is something I loved doing and yes they joke about my balance and tell me I'm drunk all the time bless them but of course they wouldnt understand. I felt I was good at something again. As I'm sure u all know being good at driving, careers, sports, writing, reading and then literally in one day becoming absolutely useless is difficult to deal with. Please dont think that I'm feelin sorry for myself as I realise there are many people much worse off. I just feel I never did or ever will make anyone proud of me

[silkwood]

I have had i for four or five years and even in that short time i have found I get frustrated with myself.I learnt to adapt but you can see so many things we took for granted.